A Pembrokeshire man fighting for his life after being diagnosed with a rare aggressive cancer at just 27 years of age, has had his case raised at the Welsh Senedd.
Joshua Carter-Hewins who lives with his wife Beth in Pembroke, has been going through chemotherapy after being diagnosed with a post-transplant Burkitt Lymphoma in June this year - a very rare and aggressive type of cancer.
Beth stated: “The journey thus far has been an extremely challenging one with many obstacles getting in the way.
“Just as treatment was coming to an end and we thought there was light at the end of the tunnel. Josh had a scan due to some symptoms, and the scan showed the worst possible outcome we could expect.
“The intensive chemotherapy treatment has not been working, and the cancer is actually showing up in more places than before.
“The consultant had a few suggestions in regard to other treatments but we have found out that Josh isn’t eligible.
“We have been doing our own research and found two potential drugs that could be used to treat the lymphoma, although it may not be able to be funded by the NHS.”
A GoFundMe page set up (at: https://gofund.me/103e1574) has already raised over £70,000 for the cause.
Senedd Member for Carmarthen West and South Pembrokeshire, Samuel Kurtz has now raised the matter at Welsh Parliament, making a special request for an urgent statement and intervention from the Cabinet Secretary for health on approving two drugs to treat Joshua’s condition.
“His family, desperate for alternatives, found that a combination of glofitamab and polatuzumab vedotin has shown success in treating similar patients in Europe,” explained Mr Kurtz.
“A recent study from Copenhagen also supports the effectiveness of this combination, but it remains unlicensed for Burkitt, and NHS approval is still needed.
“Josh and his family and friends have already raised over £68,000 of his £100,000 target so that he can get private treatment, yet still need the drugs to be approved.
“Josh’s loving wife is currently desperately trying to reach out to the NHS and the drug company to ask them to grant the use of the drug on compassionate grounds. This has been done before, although it’s very rare.
“So please, on behalf of Josh and his family, can the Health Secretary urgently look at this and get this done,” added Mr Kurtz.
Joshua Carter-Hewins who lives with his wife Beth in Pembroke, has been going through chemotherapy after being diagnosed with a post-transplant Burkitt Lymphoma in June this year - a very rare and aggressive type of cancer.
Beth stated: “The journey thus far has been an extremely challenging one with many obstacles getting in the way.
“Just as treatment was coming to an end and we thought there was light at the end of the tunnel. Josh had a scan due to some symptoms, and the scan showed the worst possible outcome we could expect.
“The intensive chemotherapy treatment has not been working, and the cancer is actually showing up in more places than before.
“The consultant had a few suggestions in regard to other treatments but we have found out that Josh isn’t eligible.
“We have been doing our own research and found two potential drugs that could be used to treat the lymphoma, although it may not be able to be funded by the NHS.”
A GoFundMe page set up (at: https://gofund.me/103e1574) has already raised over £70,000 for the cause.
Senedd Member for Carmarthen West and South Pembrokeshire, Samuel Kurtz has now raised the matter at Welsh Parliament, making a special request for an urgent statement and intervention from the Cabinet Secretary for health on approving two drugs to treat Joshua’s condition.
“His family, desperate for alternatives, found that a combination of glofitamab and polatuzumab vedotin has shown success in treating similar patients in Europe,” explained Mr Kurtz.
“A recent study from Copenhagen also supports the effectiveness of this combination, but it remains unlicensed for Burkitt, and NHS approval is still needed.
“Josh and his family and friends have already raised over £68,000 of his £100,000 target so that he can get private treatment, yet still need the drugs to be approved.
“Josh’s loving wife is currently desperately trying to reach out to the NHS and the drug company to ask them to grant the use of the drug on compassionate grounds. This has been done before, although it’s very rare.
“So please, on behalf of Josh and his family, can the Health Secretary urgently look at this and get this done,” added Mr Kurtz.
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NewsTranscript
00:00Mark Isherwood.
00:01Mark Isherwood.
00:02John Llywydd.
00:03Ross Strawell.
00:04Trevenith.
00:05Could I please request an urgent statement and intervention from the Cabinet Secretary
00:07for Health on approving two drugs to treat Burkitt's lymphoma?
00:12Joshua Carter-Hewins, a 25-year-old constituent of mine, is currently battling this rare aggressive
00:19cancer.
00:20Though often curable in children, Burkitt's lymphoma in adults has a much lower survival
00:24rate.
00:25Josh is currently receiving end-of-life care in Cardiff, after chemotherapy was unsuccessful.
00:32His family, desperate for alternatives, found that a combination of glofetamab and polituzumab
00:38vedotin has shown success in treating similar patients in Europe.
00:43A recent study from Copenhagen also supports the effectiveness of this combination, but
00:47it remains unlicensed for Burkitt's, and NHS approval is still needed.
00:52Josh and his family and friends have already raised over £68,000 of his £100,000 target
00:59so that he can get private treatment, yet still needs the drugs to be approved.
01:04As Josh's loving wife, Beth, says, we're currently desperately trying to reach out
01:09to the NHS and the drug company, Roche, to ask them to grant the use of the drug on compassionate
01:14grounds.
01:15This has been done before, although it's very rare.
01:18So please, Trevenith, on behalf of Josh and his family, can the Health Secretary urgently
01:23look at this and get this done?
01:25Well, thank you very much for drawing that to our attention and recognising the situation,
01:32a very troubling situation for Josh and his family.
01:36As you're aware, of course, NICE approval is critically important in these situations,
01:42but clearly an update in those circumstances from the Cabinet and the Secretary for Health
01:49and Social Care will be forthcoming, I'm sure.
01:54Thank you, Trevenith.
01:55We'll move on now to item four on the agenda, namely the legislative consent motion.